All Posts Tagged ‘dysautonomia


Enjoyable read; Company for the homebound

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Women in Clothes  Blueridge Press, 2014.  Interviews, surveys, essays, etc by fashion designers, celebrities and regular women chosen at random.  For example, there’s this great section where they had every woman in an office photograph their hands and then tell the story behind each one of their rings.  There’s a story behind every piece of jewelry and clothing even if it’s, “I got this at the flea market, ignored it for 7 years and then happened to be wearing it the day I got engaged.”  I love it.  For someone who’s home as much as I am, I love that I feel like I’ve got company over chit-chatting every time I read it.

Gill Pender likes it as well.


A photo gallery of recent happenings

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One of the most important things I learned from my dark 20s is that you have to keep moving mentally.  The stimulation from being sick and in pain is so unpleasant and exhausting that we stop seeking out healthy stimulation.  And then your brain gets murky and the illness/pain quietly starts dictating everything.  Perhaps highlighting moments/images/thoughts within your own personal timeline (whether it’s a mental timeline or an actual journal/blog) can keep us moving forward in even the hardest of times?

* I’m loving that I can get heavy cat food delivered to my door for the same price I’d pay at the store (with 2 day shipping!)  The cats were loving it too.  Thank you Amazon Prime.

* I went to a decoupage event last night at a local art studio .  For $15 you can get to use all their supplies to decoupage two wooden bracelets.  What a good deal and lots of fun – it’s SO easy to do.  I’m going back tomorrow to finish them.

* There’s a lot wrong with the media but something I love is that once it came out that that German Wings pilot was looking forward to “the world knowing his name” (as a result of him murdering all those innocent passengers) the press stopped referring to him by name.  Damn straight.

* How tech savvy are the offices of your medical specialist?  Dartmouth Hitchcock Medical Center has it’s own app (this is a screen shot) where I can reschedule, ask questions, request refills and even send them a picture of a symptom.  Totally impresses me every time I use it.

* Now Christopher is hardly a high-roller gambler (to me that’s a good thing) but he’s been down to Mohegan Sun Resort & Casino just a few times and is already getting free overnight stays.  He signed up for their Momentum Rewards Card and swipes it every time he sits down to play or buys something in their food court.  Bam – free overnights (most during the week) and even some free tickets to events here and there.  It’s great for me – I’m not really into gambling but love nice hotels with pools and spas.  After our next stay I’m going to write a more detailed post about why casinos can be great for those with chronic illness/chronic pain.

* Got a kick out of this article in The Equine Chronicle (not a publication I usually read, I’ll admit.)  Check out my review of AlignMed’s products here.  Recently I’ve been reflecting on posture a lot (good for your spine, helps appear professional/confident/attractive) and apparently so do judges at equestrian events.



Humor, honesty & humility should be paired with a new outfit, right?


My little Kindle book, Living Incurably Despite Chronic Illness, received a kind review in the Spring 2015 Lupus Now magazine.  It was mentioned in the Media Roundup, along with the 2014 book, Lupus Q&A: Everything You Need to Know Revised and Updated, 3rd edition.

Living Incurably Despite Chronic Illness, by AshleyJane Kneeland (self-published, 2014).  This little book is an Editor’s Pick for its humor, honesty, and humility.  Available for $2.99 through Kindle; take a sneak peek here.

This review, following my article on  last week, has made for an exciting year so far.  At what point is celebrating in order?  And can I myself declare celebrating to commence? Or does someone else have to take care of that?  Have I mentioned that I often worry that I’m a narcissist?  Apparently Dr.Drew has a test for it but I’m too terrified to take it.  So I guess the best course of action would be to stop thinking about celebrating myself and get back to praying away the inherent faults of my personality. But if you want to send flowers or Target gift cards that’s cool too.

I hope this spring you all get some form of good news as well.



Living Incurably Compressed, Part II


As I talked about in Part I of this post, my electrophysiologist prescribed compression stockings to help manage the symptoms of POTS.  Basically the stockings are designed to be tight enough that they keep more blood volume in the upper half of my body, thus resulting in less dizziness.

For a few months I wore the full length tights, the ones that cover you from toe to waistband, but I have now moved on to thigh-highs, which are better suited for a tall (5’10”) frame like mine.  They are just wonderful.  A kind of sticky band at the top keeps them in place all day – no slipping down whatsoever, and no painful pinching.  In the picture below, I have the sticky band folded down so you can see it.  When it’s up and in place, the tights are just black all the way up.

Being winter and freezing cold in NH, I’ve been wearing my comfy regular tights from Target over the thigh-high compression stockings.  The thigh-highs on their own would be a bit drafty if you know what I mean!  For winter I’ve been using a thicker opaque material, but come spring I will order some lighter pairs that look more like nylons.

I’ve become a believer in the product, I think they really do work.  And since my thick black winter pair looks pretty much the same as the opaque black tights I’d be wearing anyway, I don’t get that I feel old and sick and frumpy feeling when I wear them.  (The jaunty gentleman on the box doesn’t look like he feels frumpy either.  He looks ready for a day at his Mad Men-esque advertising firm then a wild night on the town involving ladies who are anything but frumpy.)  I’ve been told they have lots of sheer styles for warmer weather, but I’m still a little skeptical about wearing them with shorts in the summer.  I’ll keep you updated.




My Guest Post on the blog, “Counting My Spoons”


The lovely Julie Ryan is hosting a guest post of mine over at her blog, Counting My Spoons.  Click here or on the image below to read the post entitled, “Making It Work: Chronic Illness and Fashion.”  

Would you indulge me in something?  I think it would be so fun if everyone posted a picture of themselves wearing their own favorite outfit – either tweet it and tag me @LivingIncurably, Instagram it and tag me @LivingIncurably or post it on my Facebook Page   Can’t wait to see you and your fashion!




Living Incurably on Instagram

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Living Incurably is now on Instagram! There will be some crossover with the blog, but also some original content as well. I hope to see you there and follow you in return!


Follow this link to Living Incurably’s Instagram page.  Here’s a photo that wouldn’t normally be on the blog but would be on Instagram.  Click to read the caption and read the (short) story behind the photo.




Organized Bohemian

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The house we live in has “character” or is…how to say, a little….ramshackle in places, and while I do love clean uncluttered space, minimalist decorating here at Chez Boots only accentuates the plentiful cracks, tilts and gaps.  So I’ve been slowly decorating with a theme I have come to call, “Organized Bohemian.”  “Bohemian” in the sense of artsy and colorful (distracting ones eyes from the cracks, tilts and gaps) and “organized” in the sense of sending a clear message that this is not in fact a hippie commune.

The bedroom has been my latest focus, where I ditched an enormously wide falling-apart bed frame, and bohemed it up with a drapy canopy and a luscious amount of colorful throw pillows.  Voila. We’ve got a romantic and comforting artsy little nest.  When my Venn Diagram dictates an afternoon in bed, I feel quite luxurious laying there.  And so does Midge.


Duvet cover by Target.  Sponge-painted walls by us, paint from Lowes.  Art by Christopher.  Throw pillows from Marshall’s.  Canopy from Amazon.  Scarf atop canopy a brilliant find at our local Rite Aid.  Cracks in the walls and tilted floor by Father Time & Mother Nature.

How could you make your Venn Diagram dictated resting spot more enjoyable for yourself?